Monday, October 28, 2013

Since this week was a relatively uneventful one in Lemon's life, I decided to devote this week's blog post to an issue that has been on my mind a lot since the climb last week, and one that has been generating a lot of controversy in the CF community. This is the issue of the Cystic Fibrosis Foundation's new policy regarding the attendance of CF patients at Foundation events. The policy (which you can read in its entirety here) states that only one CF patient, presumably to be chosen by event organizers, is permitted to attend an indoor Foundation-sponsored event.

The rationale for the policy is that CF patients are at risk for lung infections by particular bacteria--bacteria which almost never infect the lungs of non-CF individuals. Research has made it pretty clear that under at least some circumstances, these bacteria can spread between CF patients, leading to severe illness or even death. This risk is the reason why CF clinics do not have waiting rooms (where patients would be likely to sit near each other), and why the exam rooms at the clinic are completely sanitized between patients. Along these same lines, the CF Foundation decided to err on the side of caution and try to eliminate the risk that a CF patient infected with one of these bacteria might attend an event and unintentionally infect another patient who happened to be there.

Although well intentioned, this policy has been met with resistance from some adult CF patients, who view it as overly cautious and paternalistic. They also feel that the policy stigmatizes them, and prevents them from interacting and socializing with other patients. In their view, patients (or their parents) should be allowed to assess the risks of being near other patients, and if they deem that the benefits of attending the event outweigh the risk of contracting a lung infection, they should be able to attend the events.

This policy has generated so much controversy in the community that a pair of opinion pieces on the subject were recently published in the medical journal Chest. Here, you can read the piece in favor of the policy, written by CF researchers, which summarizes the studies indicating that disease-causing bacteria can be spread between CF patients. You can then read thecompanion piece, written by several CF patients with medical or research training, which argues that the actual risk of disease spreading between patients who are merely in the same room is relatively low, and is outweighed by the social benefits to patients who attend events. They feel that adult patients should be allowed to assess the available information on the risks and benefits, and make their own decisions about whether or not to attend events.

There are several reasons why I firmly support the Foundation's new policy, and why I feel that it is extremely important for other patients and their families to comply with it. First, while I agree with those who do not support the policy that the risk of an infection spreading from one patient to another at an event is small, I feel that the risk is very real. Further, the potential consequences of an infection are particularly grim since the bacterial strains spread between CF patients may cause more severe disease than those that patients pick up from the natural environment. Second, while it might be theoretically possible to minimize the risk by having CF patients at an event stay as far away from each other as possible, the truth of the matter is that since modern treatments for the disease are so good, it is almost impossible to tell who at an event has CF, and who doesn't. Patients who are concerned about stigmatization are unlikely to consent to wear a badge or ribbon to allow other patients to identify them and steer clear. Third, although CF patients are routinely tested to determine whether they are currently carrying any harmful bacteria (typically one test every 3 months), the infections can come up at any time and often don't produce symptoms right away. So, even someone who in good faith believes himself not to be at risk of spreading an infection may be doing just that. In other words, the risk is real, the potential consequences are dire, and alternate ways of minimizing the risk are inherently limited. Thus, the CF Foundation's new policy seems to me to be the only logical way forward for the time being.

I certainly acknowledge the importance of social interaction between CF patients--my cousin, who has professional expertise on the topic, recently wrote a piece on the importance ofsocial interaction between young adults with cancer, and analagous arguments can certainly be drawn about the importance of interactions between CF patients for companionship and support. In this day and age, though, a great deal of that interaction can take place online, where there is no risk of disease transmission. In a follow-up piece, my cousin notes, correctly in my opinion, that the quality of interaction that patients get from online interactions is fundamentally different than the quality of in person interactions. There are some aspects of in-person interactions that are hard to replicate online. Adult patients (or parents of kids with CF) can certainly decide for themselves whether these in-person elements of interaction are worth the risk of contracting a lung infection, and get together any time they choose--just not at a CF Foundation event.

The new policy was on my mind at the Climb for CF last week, since a large printout of the Foundation's policy was clearly on display at the check-in table. It made me think about how much I looked forward to some day having Lemon be the one CF patient to attend an event, to serve as an inspiration for research and fundraising (because, really, who could resist that face?). I suppose as a rule-following sort of person, I had imagined that people in the CF community would respect the new policy, regardless of what they personally thought about it. You can imagine my surprise, then, when over the course of the morning of the climb it became clear to me from overhearing things said by those around me that there were at least four CF patients in attendance. Three of them were children of less than 10 years old. Since this was my first Foundation event, I can't say whether this is typical or not. But, the fact that CF patients other than the designated one attended the event led me to the immediate conclusion that I would never, under any circumstances, bring Lemon to a Foundation event.

I am a firm believer that adults should be able to choose to assume risks for themselves, and to some degree, for their children--provided that by assuming those risks, they do not place at risk those who, by their actions, are trying to follow the rules and avoid risk. Adults can choose to drink alcohol, which carries some inherent risk--but they cannot then choose to get behind the wheel of a car, because such behavior puts at risk everyone around the drunk person, including those who are following all the rules of the road. Similarly, I feel that adult CF patients can chose to get together at private gatherings and risk contracting lung infections, but by choosing to disregard the Foundation's stated policy, they are putting at risk someone (namely the designated CF patient at the event) who is following the rules and did not consent to the risk to which s/he is now being exposed.

So, what do you all think? Is the Foundation's policy a good idea, or not? Would you bring your child to a Foundation event? Do the benefits outweigh the risks? Let your voice be heard in the comments area!

Here's a little movie of Lemon demonstrating his new leg strength and coordination (as well as his vocalizing!) to watch while you think about what to say.

Monday, October 21, 2013

What a fantastic week this has been. It began with a very successful test run of our child care arrangements. Nona came over several mornings this week and watched Lemon while I worked from home. They get along very well, and seem to really enjoy each other's company. I feel confident enough about leaving Lemon and Nona unsupervised that I'm actually going to head into the office a couple of times this coming week for a few hours each time. Although Lemon is getting better about taking a bottle, he still really only eats a snack-sized meal each time, so I don't want to leave him for too long--a few hours at a time to start.

On Friday, we took Lemon for his two-month check up. He weighed in at an impressive 11lb 6oz, continuing to gain weight at 1.5 times the normal rate. He's closing in on the 50th percentile for weight, or if you believe the Android version of the baby app, he's already there! He's also working on some new neurological developments, like the all-important social smile!

The most significant event of this week was the Climb for CF. On Sunday morning, I fed Lemon and got ready for our longest separation since he was born--about 5 hours all told. I hopped on the T and headed downtown to One International Place, a 46 story building in downtown Boston.

There, I found the lobby fully decorated for the climb, and tons of other climbers getting ready to go. I was particularly amused by the presence of what I can only think to call "stair geeks"--people whose athletic passion is racing up the stairs in tall buildings. There seems to be a group of these people, four of whom were present at this event, who travel around the country (and the world) to participate in stair climbs. One guy even had fancy calf-support socks and gloves. These guys did two, three, or even four repeats of the building. Since I'm just getting my athletic act back together, I was perfectly happy to just climb the building once.

I signed in, picked up my number and T-shirt, and then posed for a pre-climb photo. And yes, just for the record, I was wearing a garment on the lower half of my body.

I thought that having spent my athletic career to date in distance running and cycling, I'd already identified the least spectator-friendly sports to participate in. However, it turns out that stair climbing offers even less visual entertainment for the onlookers. This photo shows the start, where climbers took off one at a time, separated by 30 seconds. That view is also totally representative of
the middle and end of the event, too. Other than the lack of visual interest, the climb went quite smoothly. I took it at a very conservative pace and arrived at the top feeling like I'd gotten a good workout, but not totally wrecked. Even at my moderate pace, I placed a respectable 5th in my age group. And, the views of Boston from the top were quite marvelous.

More important than the feeling of accomplishment at having completed the climb was the feeling of accomplishment that you all facilitated through your generous support--together we raised nearly $7500 for CF research, five times my original fundraising goal. Lemon, Papa Bear and I are all incredibly grateful to all of you. I hope in the future, when we have a little more time to get organized, that many of you will join me as part of "Team Lemon" at a CF fundraising event. It's a great community with wonderful spirit, and it will be so inspiring to have you there with me!

Monday, October 14, 2013

The second week of October is always traditionally a big one in our household, since it contains both my birthday (the 8th) and our wedding anniversary (the 10th). But, this year, I basically forgot about both events until just a few days beforehand. Somehow, they just don't seem quite as important anymore. I used to find it funny that my mother could never remember her own birthday or how old she was. Suddenly, it's no longer funny--it's my reality now, too. And what did I do on my birthday? I don't really remember, other than that Lemon looked particularly cute first thing in the morning, and that I went to CVS and picked up his new prescription for three months worth of enzymes at the new, higher dose.

Luckily for me, Papa Bear didn't forget the events of the week and made time in his busy schedule to get me some beautiful flowers, fancy pears from Harry and David, and bath salts (the kind you actually put in the bath tub, not to be confused with the kind that I learned about last time I looked up bath salts on Google). In keeping with household tradition, he also got me one gift that benefits him directly, in this case a series of magazines with recipes from the wonderful Scratch Bakery in South Portland, ME. I'm particularly eager to try the recipe for their incredible cinnamon rolls. And, now I have a whole new excuse to make them--practice for Lemon's future high-calorie diet.

This week also marked my last week of maternity leave, and I have spent a lot of time wrestling with the idea of returning to work. On the one hand, I feel like I always intended to go back to work full time, and I've invested so much of my life in getting the training and experience to advance an ambitious career in a field that I love. On the other hand, I have a fragile baby who needs my love and attention--and currently needs to be fed every two hours. Regardless of the CF diagnosis, eight weeks just seems too young for a baby to be left with someone else. Luckily for me, I have a very sympathetic boss (whose own son was diagnosed with Type 1 Diabetes within weeks of his birth) who is letting me work from home for the next two weeks while we give our child care arrangements a dry run. Doubly luckily for me, Nona is going to step in and watch Lemon several mornings a week, so even when he isn't with me, he will be with someone who really loves him. That, and the fact that Papa Bear, Lemon, and I are all on my health insurance, is basically the only thing getting me back into gainful employment just now.

In addition to all the observances of "anni-bir-sary" week, this weekend we were finally able to introduce Lemon to some more very important relatives. My father (Opa) is the eldest of four brothers. Throughout my childhood, the four brothers have been cornerstones of the family and wonderful fathers to a total of 13 children. Every occasion on that side of the family is full of memories if these four guys setting an example for me and all my cousins about the importance of tight family bonds and a working knowledge of the rules of contract bridge. So, it was wonderful to at last introduce Lemon to two of my three paternal uncles (and two fantastic aunts, too!). I hope that even as the family spreads out geographically, Lemon will come to know and love all the aunts, uncles, and cousins who have been so dear to me my entire life. Maybe he'll even give his Opa a thrill by taking a seat at the bridge table some day.

In fitness news, this week saw my first 5 mile run since Lemon was born. I'm still slower than I was pre-pregnancy, but can slowly feel my old powers returning. During the run, Lemon got a taste of the occupational hazards that face him as my training partner. Our jogging stroller occasionally picks up a leaf in the front wheel and flings it straight back at Lemon's head!

I'm glad that my fitness is slowly getting back on track, since the CF climb (46 flights up in one of Boston's tallest buildings) is just a week away. I cannot thank all of you enough for your amazingly generous contributions in Lemon's honor. I am so moved by your support, and by the knowledge that at only 8 weeks old, Lemon has already made a big difference in the world. Last week, I set what I thought was an ambitious goal of raising $1500. In just one week, I surpassed that goal three times over, raising $4665 so far. If you haven't contributed yet, there is still time, and your donation will help fund research that can improve the quality and length of Lemon's life. Please click here to access my fundraising page and make your donation by this coming Saturday, October 19--no donation is too small! I've set a new goal of $5000 and with your help I think this is within reach.

Biomedical research has been at the center of my life for a decade and a half, but has never been closer to my heart than it is now. The more I learn about what's going on in the CF field, the more confident I am that amazing new treatments are just around the corner. The fact of the matter is that the research to develop these treatments costs money--a lot of money--and in this day and age, with fractious environment in Washington, we cannot rely on public money alone to support it. So, please join Jen H., Chris, Sheldon, Ruth, Jared, Lauren, Jon, Jen M., Shuyu, Erik, Naomi, Linn, Dave W., Jason, Jeff, Carol M., Becca, Rene, Lenny, Kathy, Eric, Joe, Dave H., Dale, Mike, Doug, Gail, Rich, Susan, Sarah, Angela, Dudley, Carol L., David G., David S., Betty, Steve, Shoshana, Dov, Edith, and Richard by donating today. Your donation will help ensure that some day, "CF" just stands for "cure found."

Monday, October 7, 2013

This week we had our third visit to the CF clinic at Children's. We all felt like we are finally getting the hang of these visits, and this one felt much less stressful than the first two. As someone who has been very healthy her whole life, I think I have that not-uncommon fear/loathing of hospitals. But, for Lemon's sake, I really need to put that out of my mind, since regular hospital visits will always be a part of his life. Since babies are so sensitive to the emotional state of their parents, it's very important for Papa Bear and me to remain calm during these visits to reassure Lemon that all is well.

The first exciting thing that happened on this visit was Lemon's weigh-in. He hadn't been weighed in two weeks, so although we could tell that he'd grown, we didn't know how much. Then, we put him on the scale--10 pounds! He has continued to grow at roughly 1.5 times the normal infant growth rate, and is rapidly closing on the 50th percentile for his age. He's so big, in fact, that we now have to double his dosage of enzymes, from one pill per feeding to two. Everyone was really thrilled with his progress, including Lemon himself!

We also turned in our first set of paperwork for Lemon's clinical study, and got our new handouts for October. As part of the study, the researchers need a stool sample at every visit. On our past visits, Lemon has been pretty cooperative about producing a nice fresh one sometime during the appointment, but lately he's started going through fewer diapers per day (yay!), and as our visit was drawing to a close, there was still no sample. So, the study coordinator gave us a kit for sending in a sample (ie a pre-paid envelope to mail a dirty diaper via the United States Postal Service). I really had to wonder to myself how I would respond to the earnest question of the postal clerk when I went to mail the thing in--"Does this package contain anything liquid, fragile, or potentially hazardous?" "Ummm...no...not exactly..."

Fortunately for the USPS, our stay at the CF clinic was extended by Lemon's first chest X-ray, during which he did manage to produce a nice sample for the clinical study. The purpose of this X-ray was just to record a baseline measurement so that his doctors have something to compare with in the future. I once again got to play the role of physician's assistant/baby immobilizer. I put on a heavy lead smock, and then held Lemon still with his arms above his head while the technician took two X-rays, one from the top down and one from the side. Lemon took the whole thing really well and didn't protest at all. I was reminded how funny a baby's proportions are--with his arms held over his head, Lemon's elbows are about level with his ears, and his hands can just barely touch each other over the top of his head.

Finally, this week I signed up for my first fundraising event for CF: the third annual Boston CF Climb, which will take place on October 20 at One International Place near the Boston Waterfront. There, I will join lots of CF parents and other supporters in climbing the stairs all the way up to the top floor of the 46-story building to raise money and awareness for CF. You can view my fundraising page by clicking HERE! I've set the relatively ambitious goal of raising $1500 in just two weeks. Please help me (and Lemon) by making a donation today. As always, thanks to all of you for your support!